Comments on: The right drug for the wrong disease? http://www.scienceline.org/2006/10/18/health-zielinska-tnf/ The Shortest Distance Between You and Science Fri, 19 Mar 2010 03:48:50 -0400 http://wordpress.org/?v=2.8.4 hourly 1 By: Nancy C. Sexton http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-1696 Nancy C. Sexton Wed, 30 Apr 2008 12:51:34 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-1696 My husband three took TNF Inhibitors for RA and was diagnosed with Non Hodgkin’s Mantle Cell Lymphoma on March 8, 2007. He begin taking the drugs in 2002, before Johnson and Johnson, i.e. Cantocor, Abbott, and Amgen/Wyeth announced that TNF Inhibitors could cause Lymphoma. Upon diagnosis, my husband was given 6 to 8 months to live; however, he had a Stem Cell Transplant on August 27, 2007, at Wake Forest Medical Center, Winston-Salem, NC. We have been through hell over these drugs. All RA victims need to be aware of what these TNF Inhibitors can do to them. My husband is only 58. This should not be happening to him. Doctors should not be subscribing these drugs to RA victims. We need to get word out about these drugs? Through our experience with these drugs, we have learned that if someone is a victim of deadly Lymphoma from taking these drugs, there is no recourse. Doctors won’t help because the drug companies treat them to luxurious trips and vacations so the doctors will prescribe the drugs to patients. Our attorney researched these drugs and was told about this by RA doctors. Furthermore, hospitals won’t help because these drug companies are benefactors on building and equipment projects for the hospitals. We know these drugs cause this deadly Lymphoma in my husband. He and his sister are within one year in age, they both have the same degree of RA. However, my husband was treated with these three drugs and his sister wasn’t treated with the drugs. My husband has Non Hodgkin’s Mantle Cell Lymphoma and his sister doesn’t have it. Furthermore, the RA doctor who treated my husband has treated him for around 15 years. He said the TNF Inhibitors caused the Lymphoma because my husband never had any problems until he took the TNF Inhibitors. You decide if you want to risk your life by taking these drugs. The truth about TNF Inhibitors should be shared with RA victims. Remicade, Enbrel, and Humria are KILLER drugs. This is not fiction; this is a man’s life. One life is One too many. My husband three took TNF Inhibitors for RA and was diagnosed with Non Hodgkin’s Mantle Cell Lymphoma on March 8, 2007. He begin taking the drugs in 2002, before Johnson and Johnson, i.e. Cantocor, Abbott, and Amgen/Wyeth announced that TNF Inhibitors could cause Lymphoma. Upon diagnosis, my husband was given 6 to 8 months to live; however, he had a Stem Cell Transplant on August 27, 2007, at Wake Forest Medical Center, Winston-Salem, NC. We have been through hell over these drugs. All RA victims need to be aware of what these TNF Inhibitors can do to them. My husband is only 58. This should not be happening to him. Doctors should not be subscribing these drugs to RA victims. We need to get word out about these drugs? Through our experience with these drugs, we have learned that if someone is a victim of deadly Lymphoma from taking these drugs, there is no recourse. Doctors won’t help because the drug companies treat them to luxurious trips and vacations so the doctors will prescribe the drugs to patients. Our attorney researched these drugs and was told about this by RA doctors. Furthermore, hospitals won’t help because these drug companies are benefactors on building and equipment projects for the hospitals. We know these drugs cause this deadly Lymphoma in my husband. He and his sister are within one year in age, they both have the same degree of RA. However, my husband was treated with these three drugs and his sister wasn’t treated with the drugs. My husband has Non Hodgkin’s Mantle Cell Lymphoma and his sister doesn’t have it. Furthermore, the RA doctor who treated my husband has treated him for around 15 years. He said the TNF Inhibitors caused the Lymphoma because my husband never had any problems until he took the TNF Inhibitors. You decide if you want to risk your life by taking these drugs. The truth about TNF Inhibitors should be shared with RA victims. Remicade, Enbrel, and Humria are KILLER drugs. This is not fiction; this is a man’s life. One life is One too many.

]]> By: Nancy C. Sexton http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-1577 Nancy C. Sexton Fri, 04 Apr 2008 18:10:41 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-1577 I was wondering if you would be interested in doing a "real life story" on what TNF Inhibitors, i.e. Remicade, Enbrel, Humria do to people. My husband, Lewis, took these three drugs for four years and developed Non Hodgkin's Mantle Cell Lymphoma. He has recently had a Stem Cell Transplant; however the effects of these drugs have turned our lives upside down. If you are interested in doing this story on your website, in an effort to save other lives, I can provide Lewis's complete story along with a letter from the RA Doctor who treated Lewis for the past 15 years stating that these TNF Inhibitors cause the onset of Lewis's illness. The same doctor treated Lewis for RA for 15 years and Lewis never had any problems until he took the TNF Inhibitor drugs. Thank you in advance for your consideration of doing this story. Please let me know if you would be interested in the full story and the letter from the doctor. Nancy C. Sexton, M.S. Ed., wife and Power of Attorney for Lewis Z. Stroup, TNF Inhibitor Victim. nancycsexton@embarqmail.com I was wondering if you would be interested in doing a “real life story” on what TNF Inhibitors, i.e. Remicade, Enbrel, Humria do to people. My husband, Lewis, took these three drugs for four years and developed Non Hodgkin’s Mantle Cell Lymphoma. He has recently had a Stem Cell Transplant; however the effects of these drugs have turned our lives upside down. If you are interested in doing this story on your website, in an effort to save other lives, I can provide Lewis’s complete story along with a letter from the RA Doctor who treated Lewis for the past 15 years stating that these TNF Inhibitors cause the onset of Lewis’s illness. The same doctor treated Lewis for RA for 15 years and Lewis never had any problems until he took the TNF Inhibitor drugs.

Thank you in advance for your consideration of doing this story. Please let me know if you would be interested in the full story and the letter from the doctor.

Nancy C. Sexton, M.S. Ed., wife and Power of Attorney for Lewis Z. Stroup, TNF Inhibitor Victim.
nancycsexton@embarqmail.com

]]> By: Don Norquay http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-700 Don Norquay Sat, 17 Feb 2007 18:16:45 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-700 I have been a psoriasis sufferer for about 30 years. I was also diagnosed with a form of psoriatic arthritis, psoriatic spondylarthropy, over 20 years ago. Psoriatic arthritis occurs in a substantial percentage of moderate to severe psoriasis patients and over time causes permanent joint damage and can lead to disability. Enbrel has made a huge difference in my life, both by (almost) clearing my skin, and substantially reducing the pain, stiffness, and tenderness in my back and rib cage and improving my overall energy level. The back pain and fatigue caused by the systemic inflammation was seriously impairing my daily functioning, and adversely affecting my ability to keep working. The embarrassment (of the skin appearance and trail of flakes everywhere I went), the itching, scaling, and cracking and bleeding of the skin, and the burden of UV treatments 3 times a week, was in fact both physically and emotionally debilitating. Due to the burdens of the illness, psoriasis sufferers have a higher incidence of clinical depression. Also, even if the disease were 'only' emotionally debilitating, chronic emotional stress undoubtedly takes a physical toll. In addition, psoriasis patients have a substantially increased risk of cardiovascular disease (which is now more and more being shown to be related to inflammation), possibly as high as those with diabetes. The increased risk of cancer and infection therefore needs to be weighed against a greater likelihood of an adverse cardiovascular event. Further, UV treatment is not without its own risks. The relationship to long term UV exposure and skin cancer is well known. My own view is that Enbrel should be used in even moderate cases of psoriasis at an early stage, to stop progression of the disease and the potential of pain and damage from psoriatic arthritis. If started at an early stage, the dose needed to keep the disease under control could potentially be lowered. As cancer and infection risks are dose related, this may be the better approach to maximize benefits for the affected population as a whole, rather than limiting the treatment to the most severe cases who also inherently have a greater risk co-morbid illnesses. I have been a psoriasis sufferer for about 30 years. I was also diagnosed with a form of psoriatic arthritis, psoriatic spondylarthropy, over 20 years ago. Psoriatic arthritis occurs in a substantial percentage of moderate to severe psoriasis patients and over time causes permanent joint damage and can lead to disability. Enbrel has made a huge difference in my life, both by (almost) clearing my skin, and substantially reducing the pain, stiffness, and tenderness in my back and rib cage and improving my overall energy level. The back pain and fatigue caused by the systemic inflammation was seriously impairing my daily functioning, and adversely affecting my ability to keep working. The embarrassment (of the skin appearance and trail of flakes everywhere I went), the itching, scaling, and cracking and bleeding of the skin, and the burden of UV treatments 3 times a week, was in fact both physically and emotionally debilitating. Due to the burdens of the illness, psoriasis sufferers have a higher incidence of clinical depression. Also, even if the disease were ‘only’ emotionally debilitating, chronic emotional stress undoubtedly takes a physical toll. In addition, psoriasis patients have a substantially increased risk of cardiovascular disease (which is now more and more being shown to be related to inflammation), possibly as high as those with diabetes. The increased risk of cancer and infection therefore needs to be weighed against a greater likelihood of an adverse cardiovascular event. Further, UV treatment is not without its own risks. The relationship to long term UV exposure and skin cancer is well known. My own view is that Enbrel should be used in even moderate cases of psoriasis at an early stage, to stop progression of the disease and the potential of pain and damage from psoriatic arthritis. If started at an early stage, the dose needed to keep the disease under control could potentially be lowered. As cancer and infection risks are dose related, this may be the better approach to maximize benefits for the affected population as a whole, rather than limiting the treatment to the most severe cases who also inherently have a greater risk co-morbid illnesses.

]]> By: jansenkoe http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-555 jansenkoe Wed, 22 Nov 2006 07:19:02 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-555 This BLOGS are very fine and all the parts are very good. So i also give a segation- http://www.aalgo.com This BLOGS are very fine and all the parts are very good.
So i also give a segation-
http://www.aalgo.com

]]> By: Edyta Zielinska http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-506 Edyta Zielinska Mon, 23 Oct 2006 05:10:23 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-506 Dr. Lebwohl's comments reflect his position, and as such provide valuable information for our readers. However, I do have notes from an interview I conducted with Dr. Lebwohl on June 13, 2006. Dr. Lebwohl’s comments reflect his position, and as such provide valuable information for our readers. However, I do have notes from an interview I conducted with Dr. Lebwohl on June 13, 2006.

]]> By: Mike Paranzino http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-505 Mike Paranzino Sat, 21 Oct 2006 18:42:10 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-505 As a former college journalist myself, I would submit that considerable work was put into this article; and yet it contains at least one glaring error, and one gaping hole in its reporting. The error, mentioned in the previous comment, is the suggestion that psoriasis "is not physically debilitating...." The psoriasis community has done an inadequate job to date educating Americans about the true impact of psoriasis, so perhaps the author can be forgiven for getting this wrong. Psoriasis often is debilitating in a number of ways, which explains why psoriasis patients are clamoring for these very treatments that the author assumes we would only take through ignorance. The gaping hole in the piece is the lack of a single quote from a psoriasis patient. The error would not have been made had the author spent some time with those of us with moderate or severe psoriasis. The tales we psoriasis patients can tell would make for some rather compelling journalism. Short of that, she should at least visit Google Images (http://images.google.com/images?q=psoriasis) and decide if she really wants to trivialize this terrible disease. Ironically, this budding journalist was on the edge of a really big story: Why are people with an oft-considered "less severe" disease lining up to take medications with potentially serious side effects? The journalist who finally tells the world how devastating psoriasis often is may have a Pulitzer in her future.... Michael Paranzino President Psoriasis Cure Now www.psoriasis-cure-now.org As a former college journalist myself, I would submit that considerable work was put into this article; and yet it contains at least one glaring error, and one gaping hole in its reporting.

The error, mentioned in the previous comment, is the suggestion that psoriasis “is not physically debilitating….” The psoriasis community has done an inadequate job to date educating Americans about the true impact of psoriasis, so perhaps the author can be forgiven for getting this wrong. Psoriasis often is debilitating in a number of ways, which explains why psoriasis patients are clamoring for these very treatments that the author assumes we would only take through ignorance.

The gaping hole in the piece is the lack of a single quote from a psoriasis patient. The error would not have been made had the author spent some time with those of us with moderate or severe psoriasis. The tales we psoriasis patients can tell would make for some rather compelling journalism. Short of that, she should at least visit Google Images (http://images.google.com/images?q=psoriasis) and decide if she really wants to trivialize this terrible disease.

Ironically, this budding journalist was on the edge of a really big story: Why are people with an oft-considered “less severe” disease lining up to take medications with potentially serious side effects? The journalist who finally tells the world how devastating psoriasis often is may have a Pulitzer in her future….

Michael Paranzino
President
Psoriasis Cure Now
http://www.psoriasis-cure-now.org

]]> By: Mark Lebwohl http://www.scienceline.org/2006/10/18/health-zielinska-tnf/comment-page-1/#comment-503 Mark Lebwohl Fri, 20 Oct 2006 23:07:22 +0000 http://scienceline.org/2006/10/18/health-zielinska-tnf/#comment-503 Mark Lebwohl First, I do not recall being interviewed for this article, so I wonder how the author is able to quote me. Second, if the author had looked at any National Psoriasis Foundation literature on biologics, she would have seen that all the warnings mentioned in her article are provided to physicians and to patients, even though the side effects discussed are still controversial. Moreover,the bulk of Psoriasis Foundation funding comes from members, not the makers of Enbrel, and more funding comes from Enbrel's competitors. Third, the author obviously noted that the JAMA study excluded Enbrel, yet the implications of this article are that the side effects attributed to the other drugs should also be applied to Enbrel. Even a superficial perusal of the medical literature on this subject would show that is not the case. Enbrel is constructed differently, blocks TNF by a different mechanism, and has a different side effect profile than the other drugs. For example, there has not been an increase in cases of tuberculosis in patients treated with Enbrel in contrast to Remicade and Humira. Fourth, much has been written to criticize the JAMA study. The patients lumped together in this "metaanalysis" weren't just on TNF blockers; many were on other immunosuppressives known to be associated with infection and malignancy. They had different degrees of severity, and were treated for different durations (especially compared to the placebo group) so others have stated that it is inappropriate to compare the outcomes of such disparate groups. Finally, I am very troubled by the statement that psoriasis of the skin is not physically debilitating. I can show her many photos of disabling or even life-threatening psoriasis of the skin, and TNF blockers are not used for patients with mild disease. And JAMA most recently showed that psoriasis is associated with an increased risk of myocardial infarction. Mark Lebwohl

First, I do not recall being interviewed for this article, so I wonder how the author is able to quote me.
Second, if the author had looked at any National Psoriasis Foundation literature on biologics, she would have seen that all the warnings mentioned in her article are provided to physicians and to patients, even though the side effects discussed are still controversial. Moreover,the bulk of Psoriasis Foundation funding comes from members, not the makers of Enbrel, and more funding comes from Enbrel’s competitors.
Third, the author obviously noted that the JAMA study excluded Enbrel, yet the implications of this article are that the side effects attributed to the other drugs should also be applied to Enbrel. Even a superficial perusal of the medical literature on this subject would show that is not the case. Enbrel is constructed differently, blocks TNF by a different mechanism, and has a different side effect profile than the other drugs. For example, there has not been an increase in cases of tuberculosis in patients treated with Enbrel in contrast to Remicade and Humira.
Fourth, much has been written to criticize the JAMA study. The patients lumped together in this “metaanalysis” weren’t just on TNF blockers; many were on other immunosuppressives known to be associated with infection and malignancy. They had different degrees of severity, and were treated for different durations (especially compared to the placebo group) so others have stated that it is inappropriate to compare the outcomes of such disparate groups.
Finally, I am very troubled by the statement that psoriasis of the skin is not physically debilitating. I can show her many photos of disabling or even life-threatening psoriasis of the skin, and TNF blockers are not used for patients with mild disease. And JAMA most recently showed that psoriasis is associated with an increased risk of myocardial infarction.

]]>